Parents and ACHD'ers Speak Out: Using the Internet for Health Information and Support
Chat Date: 1/6/00
Questions asked by:
David Lewis, M.D.
Children's Hospital of Wisconsin
Alan H. Friedman, M.D.
Yale New Haven Children's Hospital
Sarah Leroy, RN, MSN, CPNP
University of Michigan Congenital Heart Center
Edited by: Mona Barmash
The following is an abbreviated transcript of a CHAT session held on the
Congenital Heart Disease Information and Resources website. Please note that
responses included herein do not necessarily reflect the opinions of our
entire online community.
Q. How do you make sure that the information that
you are getting on the Internet is reliable?
A. I do a lot of researching in PubMed-- with
other Internet sources, I verify the information with my son's PC who is very
receptive to emailed questions. I would never follow the advice of an
Internet source in regards to medication or anything like that without first
checking with my doc.
A. I compare it to what I know, ask my docs to
verify the info. I believe that C.H.I.N. is the most "accuracy
controlled".
A.I
look to see who sponsors the site.
A. I look things up on other sites and I figure if
they all agree, it's pretty reliable, but I will always ask my doctor first.
A. I don't think that we can ever take the
information we find on the Internet at face value. Each child and situation is
different, and we must check with our child's doctor(s). People who are
wrapped up in their kids' health will never simply accept one source. You can
use the Internet info for general knowledge, but it is not a substitute for
your child's doctor.
A. We rely on our caregivers #1. We use the
Internet mostly for support. I have found some good advice though.
A. I think there is a lot of unjustified concern
in the medical field about how Internet medical information is used
A. I am most comfortable with C.H.I.N. because
they have doctors on board.
A. You pretty
much have to take it at face value, but don't ever diagnose yourself from
something you read online. The Internet is kind of like the newspaper- you
cannot rely on everything you read.
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Q. Do many parents/achd'ers communicate with
their pc via e-mail?
A. I
communicate with my son's CT surgeon via email.
A. I haven't had much luck with that yet.
A. No, I just call my PC's
A. I have never been given an email address for my
doctors.
A. It has never been suggested to us to
communicate by e-mail. It would be nice though.
A. I have before, the response time was great!
A. I communicate a significant amount of my time
with my PC via email-- which is not to say he is not receptive to phone calls
if there is something pressing.
A. I have never communicated via Email with my PC.
I was thinking of trying smoke signals as sometimes callbacks take a
while!
A. My pc says he doesn't understand email! He
asked me to explain it to him!!
A. We have never been offered an email option.
A. I haven't asked if my pc is receptive, he
answers phone calls promptly
A. My cardiologist communicates with me through
email. It is a lot easier to get a hold of him through email.
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Q. How does the Internet help you as a parent of
a child with CHD or as a person with CHD?
A. It helps me to connect to people who have been
there, done that! I didn't have that opportunity for 12 years. My husband
doesn't like to talk about it so it gives me someone to discuss chd issues
with. My husband thinks she is over her chd - he was shocked when the pc
suggested a chat!
A. We know that
we aren't alone - we have tons of support.
A. The ACHD support group has helped me to get
through tests for surgery.
A. The ACHD support group helps by knowing that
there are others out there like you!
A. It's good to stay connected with other people
with similar issues.
A. Excellent support, education, learned
experiences.
A. The Internet makes me realize that there are
others out there like me with the same problems.
A. To me, the two most important uses of the
Internet are education and support. Through the Internet, I can do Med-Line
searches and read research that would be difficult for me to get locally. I
also have the advantage of talking to people from around the world who
understand my fears, concerns and true joys.
A. Instant connection to a field of people who
share my concerns and are as passionate about pediatric cardiology as I am
A. The support that is available is the most
important thing to me.
A. The Internet has helped me to cope with my
grief...people in my immediate life don't want to hear it anymore...but I
still need to talk about my child. Also, I find it important for me to feel
connected with people who want to DO something about this. I need to direct my
energy in a positive way. Our CHDL support group is not judgmental, and
anything can be said...no matter how intense.
A. The Internet has provided me with an enormous
amount of support and has introduced me to people who understand my fears,
ones that even my family cannot comprehend.
A. First of all, you get information that you
might have missed when the doctors talked to you. At the time, you might not
have been able to understand everything.
A. For me, finding support and keeping up with the
latest information.
A. I was very lonesome for some kind of support
when my son was first born.
A. The Internet has been a great source of
comfort. Knowing that there are other parents going through the same thing
that we are. I have met many wonderful people. It is nice to get parents'
opinions too.
A. I've also learned about my defect online. I was
able to find detailed explanations.
A. Definitely sharing these intensely emotional
feelings with each other and not feeling like we are alone in this.
A. Using the Internet reminds me that there are
others out there. It really helps to give me a chance to vent, educate, and
understand. It is an outlet. My wife does not care for it. The stories are too
sad sometimes and make her feel "down".
A. I have really received an education since
joining the list--and, oh, the emotional support!
A. The online support group is a wonderful place
to meet other parents that are going through the same thing you are, and
provides a place to vent out your frustrations to someone who understands
exactly what you are going through.
A. When my son had surgery, I knew that I wasn't
alone.
A. It helps to meet others who are further along
than you are with surgery, coping with loss, etc., and it feels good to help
others who haven't been through as much as you have and offer hope.
A. Yes, especially on the controversial things
like fontan timing-- and what kind-- you have numerous ways of finding out how
it is being done elsewhere and making more educated decisions.
A. It has been amazing - I had people from the
Internet calling me at the hospital daily to find out how my son was doing
after his last surgery.
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Q. I'm
curious, how many of you have discussed using the Internet for info and/or
support with your pc? What reaction did you get if you did?
A. My PC hated it. He told my husband to get rid
of it! But without the Internet, most of us would still feel like we are the
only ones with a chd kid.
A. I told my PC about this support group and he
didn't say anything. He just let it go in one ear and out the other, so to
speak
A. My pc knows I am on it, and doing my thesis
with the contacts and information I have found through the support groups. I
give info about the Internet to other practitioners, too.
A. My son was brushed aside about it.
A. I discussed my use of the Internet with my
doctor, and he was very pleased and even asked for some information so he
could check it out.
A. My cardiologist also will give the information
to other CHD patients.
A. My doctor's office was hesitant at first, but
now they are seeing the benefits, and giving the information to other
patients.
A. I have. He thought it was great. In fact, the
Internet is how I found my cardiologist!
A. They were supportive of the idea, but had
nothing to add. In fact, I gave both of them information!
A. I have interviewed more than one PC on this
subject, and they have all been in support of it with the proviso that the
doctors' care should still come first
A. One of my daughter's pc's was interested. He
liked it when I brought him messages from some of his old patients.
A. I have not really discussed it with our PC, but
I have with a few other staff members and they have been very receptive and
asked for the C.H.I.N. site, etc.
A. I did not get a very warm response. He didn't
like the idea of giving others too much hope. He was afraid I was only giving
the "positive" side of the story.
Q. Is there a negative side?
Comment: That's strange. I'm sorry if that
sounds judgmental...but why would giving the positive side be bad?
Comment: Hope is tied to education, support, and
resources.
Comment: When the hospital offers no support, what
does one do?
A. We live with life and death issues everyday.
Being on the Internet is a double-edged sword. On the one hand we have
incredible support and some wonderful, encouraging stories. On the other hand,
we have to live through our worst nightmare - seeing other people's children
have strokes or die. Or tons of complications and long hospital stays.
A. Our hospital is still not sure about parents
supporting other parents. The social worker is very opposed to it.
Comment: Wow, does the social worker feel
threatened? Since when does someone have to have a Ph.D. to offer words of
encouragement or a hug?
A. I never found an active support group in 3
years!
A. I think the only negative thing is not being
able to hug people when you know they need it.
A. And not being able to see them face-to-face,
unless you're lucky enough to actually meet them sooner or later.
A. Since my son is doing so well, our doctor felt
that I wasn't being realistic in making sure others I communicated with knew
that things might not turn out as well with their child.
A. I was 33 years old before I knew that there was
another TOF in the world. Life is not fun feeling like you are alone. I
thought no one knew what it felt like to feel this bad.
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Q. Does your child use the Internet for health
related information or support? Do you think it is a good way for children to
learn and/or get support?
A. My 13 year old has made friends with others
through our online support groups. It has been one of the best things to
happen to him
A. Mine is too young, only 18 months old.
A. Mine is 3 years old, but when he is older, I am
sure using the Internet to connect with other kids will be a great benefit to
him.
A. I don't have a child, but I know that this has
been a great forum for me as an adult.
Q. In regards to linking to a child's site, can you think of any way
it could have a negative outcome for the child with the web site or the people
who look at it?
A. Yes, stalking could be a problem
A. Stalking is one thing I worry about.
A. I imagine that hospitals would have to be very
careful about linking to personal sites.
A. It could have a negative effect, but I think
that if you were a doctor or a nurse, you would look at the site very
carefully before giving an ok to include it.
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Q. What info/support is not available now that
you would like to see on the Internet?
A. I would like to see more doctors involved, the
way some are with the C.H.I.N. site. I would also like to see more doctors
participating in chats. The ones that have been done on this site have been
great.
A. I would like to see more doctors involved as
well.
A. I would like to see more about individual
A. I am just so glad to have Internet support that
I am not sure what else I would want!
A. I don't see any info out there related to other
defects connected with CHDs, like pulmonary vein stenosis. I also think it
would be good to have a place to regularly ask questions of doctors.
A. More comprehensive descriptions and treatment
plans for the complicated rarer defects and presentations, and surveys of
treatments which differ-- individual success rates of surgeons, institutions,
etc
A. I would like to access the hospitals' and
surgeons' actual statistics for surgeries.
A. I'd like sites to update their statistics once
in a while so that they are correct.
A. Also, a list of cardiologists who specialize in
certain defects or conditions.
A. I really think we need more information
regarding long-term care of our children. Most of the information out there
relates to infants, but I want to know more about issues that might affect my
5 year old.
A. I would like more info on the complex CHDs
such as double outlet right ventricle and right aortic arch...that kind of
information is very hard to find!
A. Maybe chat times for specific defects.
A. I think it would be good to see some of the
"success rates" and the quality of life information.
A. I feel that each hospital website should have
an easily accessible page for each surgeon and procedure, the amount of times
performed, etc.
A. I would like to see materials that teach people
how to read medical research and interpret statistics.
A. It would be nice to hear from older kids
on-line! My boy is 3/HLHS.
A. It would also be good to see information online
for siblings and how having a critically ill child can affect a marriage.
A. I would like to be able to find out more about
feeding problems and CHD kids.
A. I would really like to see some info on
research that is being done into the possible causes of CHDs, and
up-to-date research on new techniques.
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Q. When you look at a website for defect/syndrome
specific information, how do you know that the information is reliable and
unbiased?
A. That's a real concern.
A. I check for medical professionals' names.
A. A lot depends on where it's coming from-- if
it's from a parent, say recounted in a personal story, I don't even consider
it medical information
A. I either print it out and take it to my next
appointment, or email my cardiologist about it and ask him.
A. Lots of comparison, and a talk with a
professional.
A. I compare the information that I find to other
reliable sites, such as hospitals, etc.
A. I try to get an understanding, and then review
things with my cardiologist to make sure I understand things correctly.
A. The sad thing is that a lot of people think
that if something is in print, then it's true. Not many people take the time
to do what these participants do.
Q. Do you think that if this information is on a
hospital website that it is free of bias?
A. No, I do not think it is possible for one
hospital to present information without bias.
A. No, it can't. I have heard so many times about
doctors who don't offer the correct options...doctors who fail to diagnose
things, etc.
A. No-- how can any information be unbiased-- even
medical studies? Figures don't lie but liars know how to figure.
A. Definitely not. Even calling a hospital I get a
run around about certain statistics.
A. No, I don't, and I
don't believe that docs are always right. It is just one of those things you
have to judge for yourself...which is what my parents did for me and what I
have done myself as I grew older and started taking care of myself.
Everything is still pretty much going to be different with each patient.
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Q. Has your participation in online support
groups helped you to feel less anxious about things?
A. Absolutely!
A. Yes!
A. Yes
A. Oh, YES.
A. Yes, till I reach the hospital doors!
A. Online support has been a lifeline!
A. Yes, definitely. I realize that my husband and
I are not alone!
A. I don't think you ever feel less anxious.
A. I don't feel less anxious, but I do feel like
I am more realistic.
A. Support is great-- but it can't really take
away the reality of your child's condition.
A. It is so reassuring that others who have your
defect are still surviving after x number of years.
A. Yes - I have more specific questions to ask now
when I go to the PC.
A. The support, the prayers, and the hope from our
heart family are wonderful.
A. I did get through my first visit about possible
surgery thanks to this group.
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Q. A number of you have mentioned privacy issues.
Is there a privacy issue with the Internet?
A. Certainly. We lose our anonymity when we put
our stories and photos on the Internet.
A. Yes, how much info to release. I prefer
"lurking", and answering directly if I can offer anything.
A. I worry about insurance and job type issues
with privacy.
A. Well...I have heard that there have been issues
of pictures being stolen from various sites and used for ill purposes.
A. Of course. Too many things can be intercepted
or intervened by outside sources.
A. There can be, people forget that they are not
anonymous.
A. I'm open, so I'm not worried about privacy
issues.
A. I do not answer all of the questions over the
net.
A. Not really. For all of the help my son's web
site has given to people, we have only had one email that was unspeakable!
A. I wonder sometime about the language used when
physicians talk together in listservs-- how professional consultation might
get spread a bit too thin, and the confidentiality of patients could be
compromised.
A. Yes, my daughter does not like me talking about
her to an anonymous (to her) group of people.
Q. If you go to a site that requires
registration, are you concerned about what the webmasters do with your personal
information?
A. I am.
A. Yes!
A. Not really.
A Sometimes.
A. Yes, very much so.
A. Yes. What do they do with it?
A. Yes
A. Not really, but I hate getting spam.
A. I don't give out too much information
A. Not really.
A. What do they /can they do with it?
A. Yes. I am worried about spam mail. I actually
make up a false name/address etc.
Q. If
a site requires personal information to enter it, do you fill it in or just pass
it by?
A. It
depends on how badly I want to see the site.
A. I usually pass it by.
A. If they only ask for general info, then yes, I
do enter it. But mostly I just pass it by.
A. I usually do not register unless it is site
that has been referred by someone I know well.
A. I often pass-- for the same reason I won't give
my zip code at the grocery store-- why the heck do they need that info?
A. It depends. Sometimes, if it's something really
important for me to know about, I'll give the information. If I'm just
surfing, I go to the next site.
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Q.
If centers presented "statistics" would you be concerned that it
might evolve into marketing/advertising?
A. Not really.
A. No, not really.
A. No
A. Yes
A. I think we have a right to know about
statistics and success rates.
A. Yes, to a certain extent. But would like to
think the information would be correct.
A. People need that information to help in
decision-making.
A. That's a good question, but in this great world
of commercial medicine, don't we have a right to take our kids to the very
best centers?
A. It could be a concern, but our need for
information might balance that fear out.
A. I think it should evolve into
marketing/advertising, so we, consumers, can make choices, and not feel like
we are stuck with the first center we come across.
A. I think that if hospitals gave reliable
statistics, it could help some people with their decision-making process.
A. How would we know if they are correct and if
they are not so good, how do we know that those doctors don't take the most
difficult cases?
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Q. Have you had any negative experiences on the
Internet? How would you counsel others to help them avoid negative experiences?
A. I've heard other parents given a hard time,
especially after loss, much emotion.
A. Sometimes I have experienced people pretending
to be something they are not. I'm very careful about what I will say for that
reason.
A. My experiences have been limited in contact. I
have found it difficult to do research on my particular case, but the email
support group is a Godsend.
A. My single biggest negative experience (chd
related) on the net has been that sometimes it causes me to focus on my heart
condition too much.
A. I have had a couple of negative experiences on
the Internet. I think that people need to realize that they are dealing with
just words, and lack facial expressions or tones. Email messages can be easily
misconstrued, causing hurt feelings.
A. Only feeling bad inside for the mothers that
have to post In Loving Memory pages.
A. I was so naive when I first got online. I
didn't realize that people use different names than their real name, and that
sometimes they create a false life. People really do need to be careful.
Q. What advice would you give to people who are
new to the Internet?
A. People should research everything they read or
hear very carefully.
A. Do not give out your address or phone number.
A. Verify all information you are given with a
second source.
A. Be careful about what you tell people, info
like location, phone number, address, etc.
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Q. If you had the opportunity to tell a large group of
doctors and nurses about your use of the Internet, what would you say to them?
A. I would tell them that my active use of the
internet is a manifestation of my desire to find education and support about
achd, which is lacking, and that if they really desire to become an active
part of my care team, they need to recognize this and get involved.
A. I would suggest that parents get
involved in support groups online, have addresses ready to give out to people.
A. Recommend a list of accurate, helpful sites!
A. Make sure all your parents that don't know
about it are told about the resources available.
A. For me, the Internet has been a life-sanity
saver! It fills the gap I felt when faced with dealing with chd.
A. I would say the same thing I have already told
my cardiologist. The Internet is a tremendous place for support and
information, but its use must be tempered with the knowledge that not
everything you read or see is accurate, and that every case is different.
A. Word travels fast. The Internet is the new
"grassroots". Opinions here matter...so if you want to know the
"climate", here's the place to come.
A. It is a defining tool in the way the modern
consumer views medicine. Support, information, and a chance to become a more
informed participant in your own or your child's health care all abound with
the Internet.
A. I would tell the medical professionals that
they must take the time to get involved in the Internet. They must have a
vested interest in it--because their patients and their patients' parents do,
and they need to be aware of what information is being passed around on the
'Net.
A. I would tell
doctors that they should hand out an information sheet about websites and
online support groups to people at their PC visits, especially new parents.
A. I would tell them about PDHeart and ACHD. I
think they are both tremendous assets in our lives.
A. I never even heard of another child with TAPVR
until I found this group. It is great not to be alone.
A. I would say to them, even though my child has
had a correction, I live with fear each day- it does not go away. They need to
encourage their patients to explore and not feel isolated through whatever
means suits them, internet, support groups, whatever - but get them connected
with others!
A. To try it before they decide whether or not it
is a "good" thing for parents.
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Q. What do you think or hope that the future Internet
will hold for you and chd?
A. More support, and the continued knowledge that
comes from this information. It has made a world of difference about how I
view my life and myself.
A. More accurate,
professional articles on less common diseases and syndromes.
A. Access to the latest information about rare
CHDs and current advances in medicine, and continued support from peers.
A. My hope is that even more reliable information
will become available to us, that our children can connect with other children
(or adults when they reach adulthood), and that we see a blending of patients,
parents and professionals leading to the best care possible for our heart
patients.
Your feedback is very important! Please e-mail us
with any questions or comments about this article.
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